Objectives: Public awareness of palliative care (PC) is satisfactory in only twenty countries in 2013, which does not include Saudi Arabia in spite of the global efforts done to enhance the public awareness of PC. This study was conducted to evaluate the awareness, knowledge, and beliefs of the Saudi adult population about PC. Methods: A cross-sectional design study was conducted in December 2017 using a self-administered questionnaire survey that was sent through Google Docs to assess the Saudi general public on the awareness of PC. Results: There were 1987 (out of 3164, 62.8% response rate) Saudi adults who responded to the survey, in which 60.3% were males (mean age: 39.50 years, median: 39.0 years, and range: 15–77 years). There were 321 (16.2%) respondents who reported that they know PC and 454 (22.8%) answered that they have heard or were aware of PC. A total of 755 (38.2%) believe that PC improves the quality of life of sick people and 684 (34.4%) believe that PC can reduce the physical suffering of patients. Knowledge of PC was not statistically significantly affected by gender, place of residence, and marital status. On the other hand, employment and having higher levels of education led to better knowledge and more awareness of PC. Conclusion: The current study demonstrated that the knowledge and awareness of PC is still low among surveyed Saudis. There is a need for the government to advocate institutions to functionally devote programs and initiatives and promote literacy of PC in the general population. Nongovernmental sectors should also participate in programs to improve the knowledge and awareness of PC.

Palliative care (PC) could be defined as an approach to improve the quality of life of patients (and may be their families as well) suffering from life-threatening terminal illness, by means of prevention and relief of suffering through early identification; perfect assessment; and treatment of pain and other physical, psychosocial, and spiritual problems.[1]

The World Health Organization has promoted PC as being a public health issue and it was even considered by the United Nations agreements as a human right.[2],[3],[4] Although many governments accept this issue formally, the actual placing of PC within public health strategies and its translation into practice vary widely across the world, which is an issue related directly to the variations in the awareness of PC among both public populations and health-care providers.[5],[6],[7] According to a global research, public awareness of PC was considered satisfactory in only twenty countries all over the world till the year 2013 in spite of the global efforts done to enhance the public awareness of PC.[2],[8]

Several studies that were conducted to determine the public awareness and knowledge for PC showed low to very low awareness and knowledge toward PC in different countries.[5],[6],[9],[10],[11]

The development of PC all over the world has shown continuous and rapid progress on the delivery and improvement of PC. In 2011, more than half of the world's countries (58%) had at least one PC service, an increase of 21 (<9%) from 2006; however, PC was only integrated into the mainstream of care in twenty countries.[8] In Saudi Arabia, PC started in King Faisal Specialist Hospital and Research Center in Riyadh, Saudi Arabia, in the 90s.[12] Since then, there were other major hospitals in Saudi Arabia that followed suit.[12],[13] Due to this, we conducted this study to determine the awareness, knowledge, and beliefs of the Saudi adult population about PC. It is hoped that this study will serve as a basis for the health authorities and health institutions to enhance the implementation of programs, information dissemination, and awareness for the general public on PC.

Methods

A cross-sectional design study was conducted using an online self-administered questionnaire survey that was sent through Google Docs to assess the Saudi general public on the awareness of PC. Data were collected from Saudi adult general public from various regions of Saudi Arabia in December 2017. We sought the help of fellow practitioners in the distribution of the link to the survey to the general public in all regions of the kingdom. The survey included respondents below 18 years of age and those working in a health-care institution were excluded from the study.

Sample size

Using the formula for a single descriptive cross-sectional survey, we calculated the sample size using the formula described by Gorstein et al.[14] in 2007 as follows:

Where N is the required sample size, pis the estimate of the expected proportion, d is the desired level of absolute precision, and DEFF is the estimated design effect. Assuming that the P is 0.5 (or 50%), the width of the confidence interval (d) is ± 0.05 (i.e., ±5%), and DEFF is 2, the required sample size is 768.

Development and validation of the questionnaire

The questionnaire was developedfirst by a thorough searching of the previous literatures that were conducted on public and health-care awareness of PC using the following keywords: public awareness, palliative care, perception, and attitudes. From these, questions were modified and fitted to the objectives of this study. The final questionnaire was translated into Arabic language basically for the general public to understand and answer the questions properly [Appendix A]. To validate the survey questionnaire, a pilot test was done among 15 random general Saudi adults. A repeat survey using the same questionnaire on the same respondents was done a week after to determine the agreement in the responses to the questions in the questionnaire, Cronbach's alpha was 0.88. Data collected through the online survey from the Google Docs were downloaded as an SPSS file and were checked for completeness. Incomplete and blank responses were excluded from the analysis. Possibility of duplication among participants was addressed by checking the IP number together with the time stamps, exact similarity of the data, and responses by doing data sorting on Microsoft Excel (MS Excel) 2013, version 3, (Jones, Chicago, Illinois, USA). Data were encoded and analyzed using the Statistical Package for the Social Sciences (SPSS) version 23 (IBM, SPSS Inc., Armonk, NY, USA). Frequencies and percentages were generated for categorical variables, while mean and standard deviation were calculated for quantitative variables. Pearson's correlation was done to determine correlations between variables. To determine the significance between two groups, an independent t-test was done for continuous variables and Chi-square test for categorical variables. P < 0.05 was considered statistically significant.

Approval to conduct the research was granted by the Institutional Review Board of the College of Medicine, King Saud University, Riyadh, Saudi Arabia, with approval number 17/0009/IRB.

Definition of terms: Knowledge is defined as the respondents' understanding and comprehension of PC, whereas awareness is defined as the respondents' perception of the existence of PC even without the correct knowledge of what PC really is.

Results

Demographics

There were a total of 1987 Saudi adults who responded to the survey, 1198 (60.3%) were males and 789 (39.7%) were females. The mean age was 39.50 ± 13.15 years (median of 39.0 years, range of 15–77 years old). Majority of the respondents were married (n = 1629, 82.0%) and 1207 (60.7%) were college educated. The respondents came only from the central (n = 912, 45.9%) and southern (n = 1075, 54.1%) regions of Saudi Arabia, and no responses were received from the eastern and western regions. [Table 1] shows the demographic profile of all respondents.

There were 321 (16.2%) respondents who claimed that they know what PC is, while 1666 (83.8%) do not know what PC is all about. Knowledge of PC was not significantly different between genders (P = 0.752), place of residence (P = 0.514), and marital status (P = 0.140). However, there were significantly more “knowledgeable” respondents who were employed compared to the unemployed (63.2% vs. 36.8%, P = 0.003). Knowledge of PC was significantly more with respondents who had higher education (postgraduate studies) (P < 0.001). Knowledge of PC was significantly seen among respondents who have heard of PC compared to those who have not heard of PC (P < 0.001). Those who have the knowledge of PC significantly have better and clearer idea of what PC is all about (P < 0.001). Respondents who claimed to have the knowledge of PC thought that the hospital is the place to receive PC (P < 0.001). Their main source of knowledge is the hospital or health-care setting compared to those who claimed to have no knowledge of PC, whose main source of knowledge is the Internet/social media (P < 0.001) [Table 2].

Table 2: Comparison between respondents who have knowledge of palliative care compared to respondents who have no knowledge of palliative care

There were 454 (22.8%) respondents who claimed that they have heard or were aware of PC. There was no significant difference in the awareness between genders (P = 0.399), marital status (P = 0.121), and residency (P = 0.494). There were significant differences in the awareness of PC between employment status (P = 0.023) and levels of education (P < 0.001). Respondents who were aware of PC significantly have better ideas of what PC is all about (P < 0.001). Respondents who were aware of PC thought PC is done when no more treatment is available (P < 0.001). There were significantly more respondents who thought that PC should be given in a hospital setting (P < 0.001). Respondents who were aware of PC claimed that they heard about PC from working in a health-care facility, from a close friend, or from a relative receiving PC (P < 0.001). Lack of knowledge and information about PC prevents them from being aware of PC (P < 0.001) [Table 3].

Table 3: Comparison between respondents who have awareness of palliative care compared to respondents who were not aware of palliative care

As to the level of awareness of PC, there were only 40 (2.0%) respondents who have a clear idea of PC, 222 (11.2%) have a reasonable idea of PC, 178 (9.0%) have a vague idea, and 14 (0.7%) only knew it by name. Majority of the respondents (n = 1533, 77.2%) never heard of PC.

Beliefs about palliative care

When asked about what they know, believe, or think about PC, 755 (38.2%) respondents believe that PC improves the quality of life of sick people and 684 (34.4%) believe that PC can reduce physical suffering of patients [Figure 1]. There were 911 (45.8%) respondents who thought that PC tries to achieve patients' comfort, 566 (28.5%) thought that PC is for pain relief, 389 (19.6%) for patients' dignity, 260 (13.1%) for patients' peaceful death, whereas 566 (28.5%) thought that PC is for caring of patients before death, 120 (6.0%) for patients' quality of life, 54 (2.7%) for support of carers, and 503 (25.3%) do not know what PC tries to achieve.

Figure 1: Responses to question “What do you believe or think of palliative care?”

There were 648 (32.6%) respondents who do not know when patients should receive PC, whereas 578 (29.1%) thought that PC is given to patients when there is no more treatment available [Figure 2]. There were 801 (40.3%) respondents who do not know where patients should receive PC, whereas 727 (36.6%) believe that patients should receive PC in the hospital.

Sources of knowledge and information about PC and hindrances to awareness of palliative care

More than half of the respondents (n = 1035, 52.1%) were not sure or cannot remember where they heard of PC, whereas 460 (23.2%) heard PC from the Internet and social media. There were 235 (11.8%) respondents who heard of PC through working in a health-care setting and 225 (11.3%) heard PC from a close friend or relative receiving PC [Figure 3].

Majority of the respondents (n = 1948, 98.0%) thought that the lack of information and knowledge of PC is the major hindrance to their awareness of PC, whereas 39 (2.0%) thought that their reluctance to talk about death and dying is a hindrance to awareness of PC.

The concept of PC was introduced in Saudi Arabia in 1992, in which the other Middle Eastern countries followed suit.[15] However, since that time that PC was introduced, there were very few articles that tackled on this subject matter, particularly on the awareness, perception, and attitude of the general Saudi public toward PC.

Based on the results of this study, public knowledge of PC was low at 16.2%. This 16.2% rate is significantly lower compared to the public awareness of PC found in Sweden (59%),[16] Japan (63.1%),[5] Northern Ireland,[6] and even Italy (23.5%).[11] Based on the Worldwide Palliative Care Alliance Global Atlas More Details of Palliative Care at the End of Life published in 2014, Saudi Arabia is categorized as Group 3a country, which is characterized by a patchy scope, not well supported, and donor-dependent PC program, with a small number of hospice-PC services and are often limited to home-based care.[17] Currently, there is no hospice-PC center in the entire kingdom. In practice, there is still a strong family bond that exists in Saudi Arabia that it is oftentimes considered a taboo to put a family member, particularly the older members of the family, in a hospice or a home for the aged centers unlike in the Western countries.

Furthermore, we found no significant difference between gender, place of residence, and marital status on the knowledge and awareness of PC. In contrast to the Swedish study, being female, older age, having a university level of education, having worked in a health-care setting, and having a friend or family receiving PC increased the awareness and knowledge of PC. The contrast in the results of this study with the Swedish study is probably due to the relatively greater number of our male and younger study population.[16] Other reason is that, it is easier to reach males compared to females because of cultural reasons even with technological advancement. We cannot also discredit the fact that, despite the technological advancement in Saudi Arabia, there still exists a disparity in the access to health-care updates and technology between males and females and the older members of the society. Internet usage in Saudi Arabia is high (92.5%) among those aged 19–25 years and only 69.8% among 45 years and older. Even though Internet usage among the younger population is high, most of the younger population uses the Internet not for literacy but for chatting and entertainment purposes.[18]

In this study, we have explored the knowledge and understanding of PC, which give us an insight on the awareness of PC among the Saudi general public. However, our findings should be perceived within the constraints of the study. Participants were recruited electronically and the questionnaire was self-administered, introducing selection biases. Males outnumber females by half (60.3% vs. 39.7%) and majority of the respondents are younger aged members of the population.

Less than 40% of our respondents believe that PC improves the quality of life of sick people and that PC can reduce the sufferings of patients, which is somehow similar to the findings from previous studies.[1],[5],[6],[7] Furthermore, all other results shown in this study were low. In fact, all other responses were low, which is in accordance with the low level of awareness and knowledge of PC in our study population. This poor belief of the benefits of PC is interconnected with the lack of awareness and knowledge of PC in our population. In our case, the provision of PC to patients who should be receiving it should come from people working in PC and institutions that provide PC to increase the scope of PC and support the implementation of PC. Gopal and Archana[1] had summarized six important points to achieve increased awareness of PC in the general population by improving the delivery of PC services through government health programs, availability of opioids for legal usage, inclusion of PC in the teaching curriculum, behavioral modifications toward PC, noninstitutional delivery of PC (health centers), and continuous development and improvement of PC program, design, and standard. The low percentage of awareness of PC in this study can be somehow explained by the indifferent behavior of the general public, i.e., they think PC is all about “death,” so they are sacred to talk about it and even do not subject themselves to PC. Surprisingly, even the medical people have poor knowledge of PC, which leads to misunderstanding of PC.[19] There is a strong restriction by the Saudi government on the sale and use of opioids outside the hospital. Furthermore, there is a very low number of doctors and health-care personnel specializing in PC. Fellowship in PC has just recently started in Saudi Arabia with the initiatives from the Saudi Commission for Health Specialties.[20]

One limitation to this study is the nongeneralizability of our results to the general population of Saudi Arabia since the responses we obtained were only from the central and southern regions of Saudi Arabia. It would be ideal if the eastern and western regions also had their responses to the survey.

Awareness and knowledge about PC was significantly correlated with employment and level of education. It was reported in previous studies that in PC, inadequate knowledge and awareness are alluded to certain minority ethnic communities in the USA and the UK.[21],[22] The awareness, knowledge, and even use of PC are lower among the unemployed and those with lower levels of education are brought about by the influence of socioeconomic status in the understanding of the health-care processes. Health literacy has an important role in the understanding and appreciation of the benefits and purposes of PC. Again, the interlinkage between literacy, awareness, health promotion campaigns, and governmental initiative to an increased knowledge of PC is inevitable. Furthermore, poor knowledge of PC is possibly compounded by inadequate government support pushing for public literacy of PC through information campaigns and provision of a sustained delivery of PC through institutions that give proper and utmost care to patients who need it.

Conclusion

Knowledge and awareness of PC among the surveyed Saudis is very low. There is a need for more institutional efforts through implementation of educational programs for both the general population and the health-care personnel using all multimedia to advertise and promote this branch of medicine that will functionally take care of terminally ill patients and promote literacy of PC among its populace. There is also a need to conduct a kingdom-wide similar survey to confirm our results. Nongovernmental sectors should also participate in programs to improve the knowledge and awareness of PC.